Pitfalls of involvement in research

Scenario

You enthusiastically started a research project together with a patient representative last year. A year on, the relationship is still good, but the initial energy seems to have disappeared completely.

Pitfall

At the start, there were grand plans for everyone’s role and contribution, and initially that led to a wealth of information and ideas. However, persevering is a challenge: without proper agreements, substantive collaboration soon becomes a matter of informing each other and there is hardly any further development.
 

How to avoid this

• Set joint goals, not only for the content of the research itself, but also in terms of the process and collaboration.
• Frequently evaluate how things are going with the patient representative and adjust your goals if necessary.

Make it clear that you wish to publish articles about the collaboration regularly and specifically work towards those moments.

Further details

The risk of dilution is particularly prevalent in research in which the usefulness to patients is less direct and in which the collaboration is harder to define in detail.

Scenario

An enthusiastic expert by experience was included in the project group at the start of the project. The expert by experience participated actively and provided valuable input. However, it appears that they do not speak on behalf of a larger group of patients.

Pitfall

Valuable input by an expert by experience does not necessarily equate to representative patient involvement. If the standpoint of a larger patient group is desired, there is a risk that an expert by experience will contribute a relatively narrow perspective and does not represent all of the patient group. The part of the group not represented may involve less educated people, people from other cultures, young people or the elderly.

How to avoid this

Discuss diversity from the outset. Is representative input important to the research question? If so, include this in your discussions with the patient representative.

Encouraging diversity in patient input can be done in various ways.
First of all, bring to light what perspective the expert by experience can and cannot contribute.
You can achieve a broader perspective by involving a patient organisation or by conducting additional consultations (such as focus groups, interviews, questionnaires).

Further details

Diversity is a broad concept. There may be diversity in the disorder, as the condition can manifest itself in different ways. And there can be diversity in the types of patients. Do they reflect the patient population? Are cultural differences, age, gender, educational background, geography, etc. addressed?

Guidelines/tools for reaching special target groups are increasingly emerging.

Scenario

After an extensive search, the perfect expert by experience was found to participate in the project group. The expert by experience is knowledgeable, understands the jargon and acts as a discussion partner on equal footing. However, we sometimes get the feeling that the patient standpoint does not take a prominent place.

Pitfall

The complicated processes and terms used in the research world mean that an expert by experience with some knowledge of the subject matter is often sought to facilitate discussions.

There is a danger that the patient standpoint will fade into the background and that discussions will primarily take place in the researchers’ domain. This frequently occurs unnoticed and unintentionally. This is also known as ‘proto-professionalisation’.

How to avoid this

Remain focused on the patients’ standpoint by asking the question: ‘What is important to patients in this regard?’.

In addition, be aware that patients are not being involved because of their research knowledge and skills, but because of their experiential knowledge. This occasionally calls for adjusting the process or the methodology. Ensure that this is possible. As a researcher, show that you value patients’ perspectives and that you are receptive to it.

Additional consultation with a broader group of patients can be helpful. Or work with pairs, consisting of an expert by experience without the relevant background together with someone who has been trained in the relevant subject matter.

Further details

The risk of proto-professionalisation is particularly high in more fundamental and technical research, where some knowledge of the subject matter and jargon is useful to begin discussions with researchers.

Scenario

You invite people to a focus group. Few people show up, or the participants are dissatisfied after the group session. You have no idea why this is the case, but you are afraid that it had a negative effect on the results of the meeting.

Pitfall

There was a lack of attention to the specific nature of the group of people that had been invited. Perhaps the distance from the parking garage to the location of the meeting was too great, perhaps they found the décor of the meeting space unpleasant, or the working method did not suit people with this condition. As a relative outsider, you may overlook or misjudge certain matters.

How to avoid this

Involve an expert by experience or someone from the patient organisation in the practical aspects of your research design at an early stage. Ask explicitly about traits of the disorder that may affect the choice of a meeting location, the maximum duration of the meeting or a suitable working method. Even the smallest details can make a big difference!

If attendance is disappointing, feel free to ask what you could have done to ensure that they will be able to attend next time. People who sign up to share their thoughts are also happy to give their opinion about the way in which you can involve them more.

An organisation conducting clinical research invited people with Parkinson’s disease for a tour of the building prior to and during the study into a new treatment for this disorder. Although the research progressed well, the participants’ responses were only moderately positive. The interim evaluation showed that the study participants (many with motor disabilities) found the carpeting in the building’s reception area very uncomfortable.

Scenario

I am convinced that patients bring a lot of added value to my research. But I don’t want to burden them unnecessarily, which is why I always carefully consider which method is most suitable. In one of my studies, I therefore chose to organise an online focus group instead of one on location.

Pitfall

Even with the best of intentions, people often think for the patient instead of with the patient. Try not to make assumptions about the manner and intensity of involvement on behalf of patients. Patients may have other wishes. Limiting yourself from the start is likely to reduce the impact of patient involvement.

How to avoid this

It is of course important not to overburden patients. But do not make assumptions for them regarding the method of involvement. Discuss it with them. What is desirable? What is feasible? If there is a difference of opinion, try to look at other options together. The frequency and timing of involvement can make a big difference, as can support in the preparation and accessibility of the location.

Physicians and researchers who wanted to involve former breast cancer patients in the design and implementation of clinical studies did not want to overburden the women, so they opted to conduct individual interviews with the women in their own homes instead of focus groups on location. This provided valuable information. But the women indicated that they would have preferred to take part in focus groups, because they could then have exchanged experiences with other women.